First ever ALS platform drug trial comes to Duluth

The first ever platform trial for ALS is coming to Duluth.

Created through a partnership with Massachusetts General Hospital and Essentia Health, the The HEALEY ALS Platform trial is designed to evaluate multiple ALS treatments at once and is the first platform trial of its kind in the world.

"What’s unique is that we test multiple drugs in the same trial," says Merit Cudkowicz, MD, principal investigator and sponsor of the HEALEY ALS Platform Trial, director of the Sean M. Healey & AMG Center for ALS and chief of the Department of Neurology at MGH, and the Julieanne Dorn Professor of Neurology at Harvard Medical School.

"We can add drugs with an amendment very fast, we share the placebo groups so that more people are on the active treatments, and we can drop treatments that aren’t working. This is much better for people with ALS."

The trial is funded in part by the nonprofit group Never Surrender, Inc.,a Duluth-based organization whose creation was based on fundraising for ALS. They put together annual fundraisers like the Black Woods Blizzard Tour and the Kolar Toyota ALS Fishing Tournament.

Over the 27 years they have been in operation, the organization has raised over $18 million dollars to fight the disease.

"The trial is really about we’re bringing up to northern Minnesota," said David Kolquist, President of Never Surrender, Inc. "It’ll serve northern Minnesota, northern Wisconsin, the upper peninsula of Michigan. It’s about bringing the latest in the greatest trials and therapies to ALS patients in this area."

Minnesota Senator David Tomassoni from Chisholm will be a part of the upcoming trial. He announced his ALS diagnosis in July of 2021.

Tomassoni saying in a statement, "for too long there has been little or no progress in delaying the progression of this disease. Giving people the chance to have a good quality of life while living with ALS is paramount. Hopefully, the results of the huge study will contribute to that goal."

Never Surrender’s 2022 Black Woods Blizzard Tour begins in Proctor on Thursday February 3rd and runs through Saturday February 5th with 250 riders. Those wishing to support Tour riders and their efforts to raise money to fight ALS can visit www.blackwoodsblizzardtour.com.